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patient advocacy

Big steps forward in OM treatment & support in Canada

Ocumel Canada in the News

As Ocumel Canada continues to support and advocate for patients touched by ocular melanoma (OM), we are happy to see a monumental step forward in the treatment of this disease across Canada. Last week, Health Canada granted a notice of compliance (NOC) for Kimmtrak® (tebentafusp) for the treatment of metastatic ocular melanoma, closely following approvals in the United States, Australia, and the European Union.

Many patients with this rare cancer have been needing to travel from their home provinces coast to coast – to Toronto – for treatment, which is not an ideal situation for any patient, as they need to be close to their home and support system for ease and comfort as they fight this disease. Ocumel Canada is happy to report that in partnership with treating Physicians and Partners we are making progress in this situation and getting patients treated closer to home.

Global News spoke to two patients in this interview, click HERE to watch the recording.

Ocumel Canada and Save Your Skin Foundation applaud Health Canada’s approval of Kimmtrak® (tebentafusp) for the treatment of unresectable or metastatic uveal melanoma in HLA-A*02:01-positive adult patients. We now hope that every province and territory will take swift steps to list this drug on their public formularies in order to make this therapy available to patients across Canada.

We thank all patients and their caregivers who shared their experience and feedback to this process. To learn more about this immunotherapy treatment and the approval, read our full press release by clicking HERE.

To add to all of this great news – we wish to invite all Canadian OM patients or caregivers to join the VISION Registry, an online research database created by our friends at CureOM, Melanoma Research Foundation.

The database will allow researchers to better understand ocular melanoma (OM) as well as the needs and preferences of patients. For example, researchers can look at the socio-demographics, genetics, accompanying conditions, and treatments of patients from around the world and any potential links to OM that might exist.

The research will also look at patients’ experience from onset of symptoms to confirmed diagnosis and how that can be improved.

For the VISION Registry to be successful we need as many patients as possible to securely share their data. There is power in numbers!  Please register and add your information to the registry. We are eager to learn together to advance knowledge and eventually find a cure for OM.

(At this time, the registry is available in English only, but we are working on a French-Canadian translation, stay tuned!)

Click here to learn more and join the Vision Registry: https://melanoma.org/visionregistry/

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Looking Back at 2021

Our 2021 Annual Reports are out now!

It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.

Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.

We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.

Click on the images below to view the reports:

 

 

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Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

View the recording of our webinar ~ February 24, 2022

An Hour with Kathy Barnard

In this webinar, Kathy Barnard, founder of SYSF and melanoma survivor, shares her experience navigating and advocating through the Canadian health care system, which is complicated and can be confusing to many. She helps patients and caregivers understand how to get from diagnosis to surgical and/or systemic treatment of melanoma or non-melanoma skin cancer (NMSC) such as metastatic basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or merkel cell carcinoma (MCC).

Click HERE to view the recording!

And click HERE to download/print a list of Questions you can ask your Doctor

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Continuing Ocular Melanoma Awareness all year round

November is Ocular Melanoma Awareness month – and it is the time of year we at Ocumel Canada bring awareness to the importance of dilated eye exams for the detection of ocular melanoma.

We will take this opportunity though, to continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Sheila and Leanne’s stories:

 

 

 

 

 

 

 

 

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists! Please click here to learn more about them and how they have supported the #EyeGetDilated campaign this year:

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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6th Annual Patients Redefining the Future of Health Care in Canada Summit

6th Annual Patients Redefining the Future of Health Care in Canada Summit
 
Patients Redefining the Future of Health Care in Canada: COVID-19’s Echo Pandemics — the Way Forward
 
Week of November 15, 2021:
  • November 15 Echo Pandemics in Healthcare
  • November 17  Echo Pandemics in Indigenous Health
  • November 18 Echo Pandemics: The Way Forward
  • November 19  Patient Planning Session

 

Click HERE for more information: Agenda, Speakers, and Recording Links

 

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1 Week Until the Federal Election: Make Healthcare a Priority

Take Action Before September 20

Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you.  Having local candidates hear directly from patients is very powerful.

The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.

Advocating for change has never been simpler and will only take you a few seconds.

Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.

Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.

Click HERE to encourage Government to Make Healthcare a Priority

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Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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#InItTogether Campaign – Melanoma Is Personal

We’ve teamed up with Hayley Wickenheiser again this year to bring awareness to those coping with a melanoma diagnosis.  Summer is here, but if you’re not protecting yourself from the sun, the damage can be far-reaching. Melanoma is one of the top 10 cancers diagnosed in Canada and getting a diagnosis can be scary. Arming yourself with the right information you can literally change the course of your melanoma experience.

Ask about your mutation type. Do your research to find out your options. And know you are not alone in this.

Some Patients, Survivors, and Caregivers from the Save Your Skin Foundation family have come together share their story to inspire education and hope.

“I am newly diagnosed with metastatic malignant melanoma, and I plan to survive it.” – SHERI

“My melanoma came back, but I’m not letting fear in.” – BOB

“I was in end-of-life care when my doctor recommended I take part in a clinical trial.” – MIKE

“Learning that my melanoma was BRAF+ was a huge weight off my shoulders. That knowledge shaped my path through the disease.” – COLIN

“Melanoma research literally saved my life. Today I’m surrounded with the support of the melanoma community and I know they have my back.” – NATALIE

Check out this article in Elle magazine, dedicated to Canadians who have their own personal melanoma stories: 

ELLE Canada – Summer is Back ~ Do you know what you need to know about melanoma?

Check out these “Melanoma is Personal” videos on YouTube   And click here to see more clips on the SYSF youTube channel

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SYSF Around the World

“SYSF works hard to bring resources from around the world to give Canadian skin cancer patients the latest information on treatment options and disease management.

This year our May campaigns have gone around the globe – from our long-standing participation in the Global Coalition for Melanoma Patient Advocacy with the Melanoma Research Foundation to the Melanoma International Patient Advocates Coalition with AIM at Melanoma to Ocumel Canada’s partnership with the US, the UK, Ireland and Australia, all the way home to the NCCN Guidelines created in the US but used by our own Health Care Providers in Canada.

We hope you enjoy these resources and welcome questions or feedback any time.”

Natalie Richardson, Managing Director, SYSF

We are very pleased to congratulate the National Comprehensive Cancer Network on the release of a new valuable patient/caregiver resource! Save Your Skin Foundation is proud to have provided endorsement for the Guide and have our Managing Director Natalie featured on the cover!

The new NCCN Guidelines for Patients® on Melanoma provides an extremely comprehensive and informational reference for patients covering melanoma basics, testing, staging, treatment and recurrence. 

Click HERE to view and download the Guidelines

 

In collaboration with the Global Coalition for Melanoma Patient Advocacy, hosted by the Melanoma Research Foundation in the United States, Save Your Skin Foundation participated in the making of this skin check awareness video for Melanoma Awareness Month 2021, featuring melanoma patients and caregivers from across the globe demonstrating that the time it takes to do a skin self-exam is the same as that of drinking a cup of coffee. Check it out:

Need help performing a self skin check? Click here for a video tutorial!

 

Also:

Save Your Skin Foundation is a proud member of MI-PAC, a coalition of organizations across the globe committed to reducing the global melanoma burden through education, advocacy, and collaboration. MIPAC, hosted by AIM at Melanoma in the United States, works to increase awareness and change public perceptions of melanoma, empower melanoma patients to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.

Watch for our upcoming patient stories and continued awareness initiatives right here at home in Canada!  For more information or support please contact us at kathy@saveyourskin.ca / 1.800.460.5832

 

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17 BC Municipalities Proclaim May Melanoma Awareness Month

As May marks both Melanoma Awareness Month and the beginning of summer weather, it is imperative that communities across Canada be reminded of the importance of sun safety at this time of year. The COVID-19 pandemic has forced many Canadians to stay home, but that doesn’t mean they aren’t spending time outside. In fact, many have more time than usual to enjoy the outdoors, making sun safety education as relevant as ever.

“COVID-19 has highlighted everyone’s willingness to take drastic measures to preserve our health,” says Kathy Barnard, stage 4 melanoma survivor and Founder of Save Your Skin Foundation (SYSF). “Increased preventative efforts and methods of early detection, particularly in the form of public education, public policy and built environments are also needed to reduce skin cancer rates.”

Skin Cancer in Canada is still on the rise

COVID-19 isn’t the only disease whose rates can be drastically reduced through education and preventative measures. Skin cancer rates in Canada continue to rise, including melanoma, and non-melanoma skin cancers, despite being 90% preventable.

Skin cancer is the most common of all cancers. There are more new cases of skin cancer each year than the number of breast, prostate, lung and colon cancers COMBINED[1]. While most forms of non-melanoma skin cancer can be surgically removed, melanoma is an aggressive form of cancer. The five-year relative survival rate of melanoma that has metastasized is just 18%.[2]

Despite these figures, many people seek sun without taking the recommended precautionary measures, or believe that only severe burns contribute to one’s risk of skin cancer. In fact, any darkening of the skin, including a tan, is indicative of UV damage.

 

Municipal Proclamations

To increase the reach of SYSF’s awareness campaign this year, a new proclamation initiative invited BC municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations.  SYSF is pleased to announce that seventeen BC municipalities, listed below, have accepted SYSF’s invitation to proclaim the month of May 2020 ‘Melanoma Awareness Month’.  Click here to read our full press release.

City of Vancouver

City of Kelowna

City of Victoria

Town of Comox

City of Burnaby 

District of Saanich

City of Richmond

District of Central Saanich

City of New Westminster

City of Prince George

City of Surrey

City of Williams Lake

City of Whistler

District of Mission

City of Nanaimo

City of Langford

City of Campbell River 

 

Mayor of New Westminster, Jonathan Coté, was first to commit to proclaiming May 2020 as Melanoma Awareness Month, and decided to challenge other BC municipalities to follow his example. “Skin cancer is largely preventable, and yet there are more cases now than ever,” said Coté.  “This is why as Mayor of New Westminster, I’m happy to support this important initiative and challenge all BC municipalities to do the same.”

“This is an important initiative, especially for hot, sunny communities like ours,” said Mayor of Kelowna, Colin Basran. “Skin cancer is a serious public health concern, and incidences of the disease are only increasing.”

 

During Melanoma Awareness Month, we invite you to take action by publicly announcing your support of the fight against melanoma.

 

Throughout the month of May, SYSF will be engaged in several initiatives to bring awareness to melanoma, non-melanoma skin cancers, and ocular melanoma. The month will be starting out with a bang thanks to a new drawing contest aimed at youth. The contest’s theme “This is what sun safety looks like”, will encourage participants to submit drawings depicting actions or environments which help prevent skin cancer. The winning entry will be determined through open voting once the May 15th deadline for submission has passed, with a $100 gift card going to the artist with the most votes.

 

Download our custom banner photo for your Facebook cover photo below, or upload a selfie below to participate in our #WeWillDefeatMelanoma campaign! We will apply our campaign frame to your selfie and post it on our social media channels.

 

 

 

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